Living Well with Epilepsy and Other Seizure Disorders: An Expert Explains What You Really Need to Know

By Carl W. Bazil

Offering treatment options, lifestyle strategies and support, this expert health care resource for people living with epilepsy is “a welcome addition” (Eric R. Hargis, President & CEO, Epilepsy Foundation). 

Epilepsy, once mistakenly associated with demonic possession, has for centuries been a poorly understood illness. Today, though it affects nearly one out of every one hundred Americans, little comprehensive information can be found on bookshelves regarding this common and complex neurological disease. Until now.

Using his expertise in pharmacology and neuroscience, Dr. Carl Bazil demystifies epilepsy and other seizure disorders and offers medical, practical, and emotional support to patients and their families. He explains how and why seizures occur, and thoroughly discusses treatment options, the pros and cons of surgery, experimental and alternative treatments, strategies for daily living, and much more.

Substantiated with case examples, this useful book provides a much-needed window into epilepsy so that patients can achieve the full life they deserve.

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Oct 13, 2009
• ISBN: 9780061877551

Book preview

Introduction

Diagnosis with any medical condition can be worrisome, particularly if you are not well informed about it. Often the uncertainty and misunderstanding can be worse than the disease itself. This is perhaps true of epilepsy more than any other condition. Epilepsy involves the brain, a complicated and poorly understood part of the body that nonetheless is the seat of not only our experiences and our thoughts, but also our sense of self. A condition that affects the brain can therefore be more troubling, perhaps, than one that affects other parts of the body. Most people do not have a good understanding of how the brain works, and therefore of the ways epilepsy could (and more important, could not) affect daily life. In addition, epilepsy has been the subject of prejudice and misunderstanding since the beginning of time. While today people with this sometimes confusing condition are no longer thought to be possessed by demons, and many legal safeguards protect all people in the workplace, the general public is still widely confused about many aspects of this condition. If you have epilepsy, you may find yourself having to educate family, friends, and colleagues while coping with it yourself.

With any medical condition, information is often the most important aspect of care. Armed with a full understanding, people know what to expect, what to look out for—and what not to fear. This book is meant to offer comprehensive information about all aspects of epilepsy. It serves as a guide for those with the condition, and for their family members and friends who would like a more complete understanding of the condition. It is also a guide for professionals or others wanting to know more about this common, sometimes debilitating condition that raises many questions about the human brain: about the source of our thoughts and our fears, and about the meaning of creativity and insight.

Part 1 starts with a description of the normal brain, and how epilepsy can occur. Chapters discuss the different types of seizures and causes of epilepsy, and how epilepsy occurs in specific age groups. Part 2 covers treatment of epilepsy, from traditional to alternative methods. Part 3 delves into the practical aspects of living with epilepsy, including safety, lifestyle, other conditions and their relationship with epilepsy, and childbirth.

I hope that this book contains all of the information needed to fully understand epilepsy and, more important, to live a fulfilling and complete life after diagnosis.

PART ONE

About Epilepsy

1

From Normal Thoughts to Seizures: The Workings of the Brain

The brain is an incredibly complex organ that controls not only what people think and do, but who they are. Ancient philosophers believed that the heart was the seat of the soul, but we now know that it is actually the brain that is the organ of feelings and thoughts, the source of reactions to the world and our interpretations of it. The brain makes us move and speak, see and hear, feel and understand. The brain is also the source of epilepsy, which is probably why epilepsy is such a complicated disease, with manifestations as diverse as the brains from which it arises. Understanding epilepsy, then, begins with an understanding of the workings of the brain.

The brain is an organ of communication, whose job is to process all of the information important to its owner. All of the complicated things that our brain helps us do—translate the spiky shapes of letters and lines on a page into words and thoughts; steer around a pedestrian who suddenly steps into the street; recognize the face of a child and feel overwhelming love for her—consist of electrical and chemical signals that pulse between neurons, which are specialized brain cells. It’s sometimes helpful to think of the brain as a living computer. Both brains and computers are made up of individual circuits, both run (more or less) on electricity, and both are capable of retaining and processing information. Both can also malfunction: as a computer screen can briefly freeze, so can a human brain pause during a seizure. But there are differences as well. The human brain can regenerate and heal itself. This is fortunate, because although we can upgrade and buy new computers, we have only one brain throughout life. We sometimes feel that computers do things much more efficiently and easily than our own brains. But no computer can match the creativity and depth of experience that a single human brain has.

This chapter is a brief guided tour through the brain, from the relatively simple individual neuron that is either on or off to the complex networks of thought and feeling that make us human.

The Brain Cell: The Smallest Unit of Thought

The brain is made up of billions of nerve cells called neurons. Akin to the wires and circuits of the brain, neurons are held together by structural cells, called glia, that protect and insulate the circuits of the brain. Glia are like the insulation on a wire and the backing on which the circuits are mounted. Fundamentally, a neuron (or more accurately a group of neurons) in your brain interprets incoming information, mulls it over, then sends off a signal that results in actions. It is also a neuron (or a group of neurons) that, probably beginning in much the same way, causes all kinds of seizures.

Structurally, a neuron has a cell body that holds most of its workings: the genetic material that determined how it was formed, enzymes that make proteins and transmitter substances, and other machinery for producing energy to run the cell (Figure 1-1). The cell also has dendrites—arms of the cell that branch out to the surrounding area, listening to other neurons in the area and taking information back to the cell body. Some neurons have relatively simple dendritic trees that connect with only one or two other neurons; others have extensive branches connecting with dozens or more. Neurons also have an axon: the output arm of the cell. The axon carries each individual neuron’s message to other cells. A neuron, then, looks a little like a scorpion: arms out in all directions, a body that runs the show and decides when to respond, and a stinger that carries a single message to the outside.

FIGURE 1-1: The Neuron

The neuron is constantly processing information from other neurons, deciding whether it should fire (send a message itself) or stay quiet. When a neuron fires, it releases one or more chemicals called neurotransmitters—serotonin, norepinephrine, epinephrine, and glutamate are examples. Each of these chemicals can either excite—so that the receiving cell gets a buzz and thinks about firing itself—or inhibit—quieting, encouraging the receiving neuron to stay still. When a neuron fires, only other neurons with an appetite for its particular transmitter will be aroused at what are called receptor sites, the place where the neurotransmitter attaches. One neuron may respond to glutamate but not to serotonin. No receptor, and the transmitter bounces off and tries to find another neuron that’s listening. So neurons are selective in which other neurons they listen to.

Is a single neuron firing a thought, or can it be a tiny seizure? So far as we understand these, it can be neither. Neuronal firing can only be thought of as a spark. If it falls on ready tinder, a flame can result, but if it falls on water or dust, it fizzles and remains unnoticed.

Neural Networks: From a Spark to a Thought

It may be difficult to imagine how the simple on-off system of a neuron can translate into the complex thoughts and reactions of the human brain. The system begins to get more complex when the concept of neural networks comes in. Every brain contains billions of neurons, each of which can talk to one or many other neurons, and each of which listens to other (or the same) neurons. These create hundreds of thousands of neural pathways in a brain, where neurons are connected to other neurons, and there are an infinite number of possible messages. Moreover, neurons can learn. As neurons talk and listen to each other, fire and quiet, they can develop relationships among themselves. Some pathways between neurons become grooved with frequent contact, and like a well-worn path through the woods a memory is formed. Other paths become overgrown and hard to find if only used once or twice. The first time any child tries to coordinate the many muscles required to maintain balance while operating a bicycle, it’s tough. She must pedal evenly to move forward, shift weight through a turn, and feel the strain in her legs to know when to shift gears. The brain coordinates this process, and as she rides again and again, the same systems are used and refined. They become stronger and easier to access and use each time. Once she masters the skill, the neuromuscular pathways are well paved and clear: get on a bicycle even after many years, and those procedural pathways will waken and guide with an eerie accuracy. The same holds true for other things. Go back to an old neighborhood, one you haven’t seen since the age of three or four, and you may find that you mysteriously know the woods’ back paths and where the wild tulips grow. The knowledge is engraved in the neural networks, the brain’s interstates and country roads. On the other hand, try speaking French after a twenty-year interval. Those roadways have been repaved with the sticky tar of English, hardened now to crust. It will take a lot of work to clear the clogged channels. Thus the simple neuron, firing and quiet, evolves into our living thoughts, skills, and memories over years of use.

Anatomy of the Brain

Understanding of how the brain works must go beyond the neuron to the way the brain grows and develops. The most primitive structures of the brain—concerned with breathing, eating, sexual activity, and emotion—are located at the base of the brain in an area called the brainstem. This part is present in some form in all animals. The newer part of the brain, or neocortex (new brain), surrounds the brainstem and is most highly developed in humans. This area is responsible for most of the remainder of brain functions, from complex reasoning to sensation and movement. The neocortex is divided into regions separated mainly by folds in the surface of the brain. Neurons are located mainly in this surface. As humans developed, they needed more and more neurons. To fit all these cells in, rather than growing in size, the brain increased area through many folds in the surface known as sulci. There is a large division between the left and right side of the brain. There is also a large sulcus, called the central sulcus, which runs more or less from ear to ear. These large folds in the brain determine the major regions, or lobes, of the brain (Figure 1-2). The frontal lobes are located in front of the central sulcus, and the parietal lobes behind. Roughly perpendicular to the central sulcus is the Sylvian fissure, which runs backward from the ear and divides the parietal lobe (above it) from the temporal lobes below. The occipital lobes are at the back of the head and are not precisely defined by sulci.

FIGURE 1-2: Lobes of the Brain

Some structures seem to be in place before a thought ever occurs. For reasons that are not understood, but are probably at least partly genetic, the brain develops particular skills in the same regions in nearly every normal person. The major site for movement is always located just in front of the central sulcus (in the frontal lobe), and each side of the brain controls the opposite side of the body (Figure 1-3). The distribution of control is also nearly identical from person to person: e.g., leg control is deep inside the fissure that separates the hemispheres, hand control is on the side, tongue control is lower down. The finer the control needed, the more brain is involved, so the hand and the lips use up much more cortical space in the brain than do the back and the neck. The sense of touch is directly behind the motor areas, in the parietal lobes. Vision is located in the back of the head, in the occipital lobes.

FIGURE 1-3: Functional Areas of the Brain

Language, a complex human skill, requires several areas. One is located in the frontal lobe, close to the motor areas that control the lips and tongue. This region, known as Broca’s area, is primarily concerned with the production of speech rather than its interpretation. Another area, called Wernicke’s, is in the temporal lobe and is necessary for understanding speech. A person with a stroke (or a seizure) restricted to Wernicke’s area may speak apparently normally, but be completely unable to interpret things that are said to him. If Broca’s area is affected, he may understand all that is said, but be incapable of speaking back (except for automatic speech such as yes, no, or sometimes profanities; these do not seem to require the complex control that Broca’s area provides). In nearly all right-handed people, both Wernicke’s and Broca’s areas are located in the left brain. With left-handed people, language can be on the right, the left, or mixed, where both sides are used.

The Abnormal Thought: A Seizure

How, then, do these same pathways give rise to a seizure? For one of countless reasons, a group of neurons, or a neuronal pathway, becomes hyperactive. Perhaps those cells were starved of oxygen for a time at birth. Maybe they were bruised during a motorcycle accident, or maybe they were genetically misprogrammed and grew up in the wrong place or with overactive receptors. In many people with epilepsy, the brain looks completely normal. Maybe in these people, the constant reorganization of neurons just randomly made a bad connection, and reinforcement of that abnormal path caused it to grow in strength. In any case, epileptic neurons (or more likely pathways) tend to spurt a lot more transmitter, and far more frequently than they should. As a result, millions of other, normal neurons, caught up in the commotion, begin to fire. If nothing stops it (there are, remember, inhibitory pathways), soon large parts of the brain are triggered and aroused: a single spark, then a flame, and finally a forest fire. In a tonic-clonic (grand mal) seizure, every single neuron is firing simultaneously, a massive lightning storm thundering through the head, so the person cannot think or feel, and all of his muscles are commanded to violently contract, out of control.

Because of the complexity of the brain, epilepsy, to an extent like no other disease, is about individuals: each seizure experience is unique, and each person is touched by it in very different ways. Not only do the different areas of the brain have very different functions, but everyone’s brain is wired in a unique manner. A seizure will result in the perception or the response associated with the part of the brain involved. Seizures that begin in the visual areas of the brain begin with the perception of colors and shapes. These can be amorphous and vague: swirls of colors, or a floating, moving object like a huge butterfly. Or they can be incredibly distinct: the face of a deceased relative, or (as in one of my patients) Tweetybird. Other seizures may be accompanied by intense inexplicable feelings of dread; in these cases, the excitation involves the brain’s amygdala, a fascinating structure that is involved with emotion, including fear. Sometimes a seizure ripples through the auditory (hearing) regions, and then the person hears clashes, clangs, or lovely strains of music. If the language area is affected, the person may hear, but voices suddenly sound strange and meaningless, like Charlie Brown’s teacher as several of my patients have explained it. If the gustatory (taste) center is involved, then metal, vinegar, or chocolate can be tasted.

While these examples are fascinating, the majority of people do not experience anything so specific. They may lose consciousness before remembering anything or may only have a vague sense that something is different: a seizure starting in one of the brain’s many areas without a function we can easily recognize.

Most seizures start spontaneously, seemingly out of nowhere, but in a few cases they can be brought on by highly specific external cues. In these cases, the normal response to sound, light, or movement must hit an irritated area, and the connection is such that a seizure begins. I once had a patient who loved Billy Joel’s music, then began to have seizures every time she heard Piano Man. In a well-publicized case, a woman had seizures specifically triggered by newscaster Mary Hart’s voice; in another, hundreds of Japanese children had seizures from watching a single episode of Pokémon. Although unusual, this sort of reaction should not be surprising; after all, the irritated brain involved in seizures remains intimately connected to the normal surrounding areas. So just as a seizure can produce sensations that seem real, so can a real sensation occasionally trigger a seizure.

Depending upon the individual and the meaning she attaches to these strange states, seizures can have very different impacts on the person who experiences them. They can be seen as a gift, a curse, a bother, a bore. But all impact the person’s life in ways that can be confusing, terrifying, or even dangerous, particularly in the absence of adequate knowledge of what is happening. Seizures begin through the same machinery that produces our thoughts and feelings; some of the small ones may even be difficult to distinguish from normal feelings. Most seizures, however, are at least problematic and frequently disruptive. The next chapter describes specific seizure types in more detail.

2

Tickling the Brain in Many Ways: The Many Types of Seizures

One of the most common misperceptions about epilepsy is that it is a single disease. In fact, epilepsy actually includes a wide variety of conditions that have one thing in common: the brain malfunctions spontaneously, then returns to normal. Usually this means entirely normal: I have patients who are doctors, nurses, actors, artists, and writers, all successful in their fields. This process of normal functioning most of the time, but interrupted by seizures, sounds rather simple but is in fact complicated. Epilepsy comes about for a variety of reasons, from conditions that change the structure of the brain (like a stroke) to genetic conditions that alter the way the brain reacts. The latter are mostly generalized epilepsies and will be described in detail in the second part of this chapter. Generalized seizures are one of the two broad divisions in seizure type. They are called generalized because they seem to begin in all areas of the brain at once. The other seizure type, and the most common, is partial seizures: seizures that begin in a discrete area of the brain and can then spread to involve other areas or the entire brain. Because each part of the brain has distinct functions, partial seizures are incredibly variable in different people.

Many people think that partial seizures are somehow less severe or serious than generalized seizures. This is not necessarily true; the terms have only to do with how the seizure starts, and not with severity. Arguably the most mild seizures are absence seizures, consisting only of a brief staring; however, this is a generalized-seizure type. It is also confusing that a grand mal (generalized tonic-clonic) seizure can be either partial or generalized; it depends only on whether it starts small and spreads (partial, and known as a secondarily generalized tonic-clonic seizure) or whether it seems to start all over the brain (called a primary generalized tonic-clonic seizure). It may in fact be impossible for even a well-trained neurologist to distinguish a primary from a secondarily generalized seizure